A question from a patient

I received the following question below; if anyone can provide an answer it will be apreciated and I will be sure Tom gets it.

Mark,
Since last I wrote my wife's T-PLL diagnosis was confirmed at MD Anderson and we are going to start Campath therapy here in Albuquerque in the next couple of weeks.


I have a question which is:


My wife has recently been diagnosed with T-PLL and is about to start alemtuzumab (Campath) treatment.


She has been taking coriolus versicolor (turkey tail mushroom) which has been shown to be beneficial in some cancer treatments, including some Leukemia studies (http://www.mskcc.org/mskcc/html/69194.cfm ), and has no reported adverse interactions with alemtuzumab (http://www.onco-informatics.com). We are trying to understand if its use should be discontinued. Does anyone know if it has been used simultaneously in a course of treatment with alemtuzumab and what the outcomes were?




Thanks,
Tom

Being Cancer

I'm pleased to announce that I have added a "badge" on the sidebar for Dennis Pyritz's blog, Being Cancer, which recently passed 100,000 visitors.

I am pleased to learn that Dennis is returning to work part time as an RN in the transplant unit at the University hospital! Dennis, a t-PLL patient who endured Campath by infusion for his first treatment, had a successful second treatment, followed by a mini-transplant where the stem cells were donated by his brother.

1 year post transplant; wahoo!

Happy "Birthday!!"

Today marks one year since Max had his bone marrow transplant. We celebrate his Birthday and THANK GOD for this day. The one year milestone is a huge accomplishment and I am so proud of my dear husband. It has been a long journey since that day in December 2007 when I heard him say the word 'leukemia' and a few months after that when I heard the doctor say 'T-PLL.' That day in December our lives changed forever and will never be the same. We have met some amazing people along the way, many from this blog. I thank Mark for putting this in place so we can connect, share and maybe in some way help others who have T-PLL.

The year was scary at first starting with 39 long days in the hospital. At home it was filled with lots of medical needs, doctor visits and uncertainty. There were frequent visits to the BMT clinic and very limited exposure to house guests - which resulted in an extremely boring social life. Gradually we emerged back into the 'real world' and reconnected with friends and family whom we dearly missed. SKYPE saved us by allowing us to SEE friends and family from long distance. I highly recommend it!

Max was very blessed to have little to no GVHD (only a slight skin rash) and therefore never had a need for steroids. He went off immune suppressants in November and continued to improve from that point forward. The number of oral medications was gradually reduced as well. Last week he began a series of vaccinations (baby shots!) including diphtheria, whopping cough, tetanus, pneumonia, hepatitis & polio. Our visits to the clinic are on a monthly basis now and soon we will be turned back over to our oncologist at the hospital. He will return to the BMT clinic on an annual basis from that point forward.

If you have a bone marrow transplant in your future, my advice to you is to be strong, stay positive, connect with your support system and pray to God. I am happy to share more details with you if you want to contact me.

New clinican trial for T-PLL

I just received the following email. Let us hope this trial also produces significant advances in treating T-PLL!

Good afternoon,

I am contacting you since we recently opened a new trial for T-cell PLL at Stanford. I was made aware of your website from a patient who thought sharing that we have this trial open might be helpful. It is for patients with relapsed or refractory disease and treatment will be with velcade. All of the details are on clinicaltrials.gov

Best,
Holbrook Kohrt, MD

Here is the web page for recruiting:

Study of VELCADE for Relapsed or Refractory T-cell Prolymphocytic Leukemia

Welcome to Bill, Aplogies to Claire

Bill has been recently diagnosed with T-PLL, and has created a blog to chronicle his progress through treatment. keep an eye on it, and prayers for Bill!

Http://tpllbillsjourney.blogspot.com

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Claire left a comment in April and I missed it because I had turned on "comment moderation" due to obscene Chinese spam being posted on this blog. What I didn't know was that I wasn't receiving notification of the comments, as I had in the past!

So Claire, please write! click to email on the right margin (my email is mgross [at] integrity [dot] com) - Please put T-PLL in the subject line.

I hope to hear from you! again, apologies for missing your comment.

All the best to you both,
Mark

Aprea starts Phase I study with APR-246

A patient who did not respond to treatment has entered the following clinical trial, I thought it might be of interest and have posted the link.

Aprea starts Phase I study with APR-246

The MPA approval, on April 8, 2009, for Aprea to start the Phase I study meant that the company could go ahead and start the study with their first CD (APR-246, also denoted PRIMA-1MET in the literature). Patients started to be included in June 2009.

This study, APR-246-01, is a first-in-man, multi-center, open label, non-comparative, phase I, dose escalating study of APR-246 infusions in patients with refractory hematologic malignancies or prostate carcinoma.

During the treatment phase, the patient will receive APR-246 treatment on four consecutive days as a 2-hour daily intravenous infusion. The treatment phase will be followed by a 17 days follow-up phase to reveal any late adverse effects. The patient’s total duration in the study will be 21 days.